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TIME IS RUNNING OUT FOR THIS, THE FIFTH YEAR!!!!!!–get your child’s personal letter from Santa today–last day is midnight tonight….and help fund diabetes research at the DRI.
For details click the link below:www.SantaClausDRI2015.org

ONE MOM WHO RECEIVED A SANTA LETTER THIS YEAR WROTE:
“She got her letter today-it was absolutely fabulous!! SUPER impressed with all of the details and the fact that you guys talked about her YouTube T1 Diva videos! J LOVE IT!!!!!”

WHAT A MOM WROTE WHO RECEIVED A SANTA LETTER THIS YEAR:
“She got her letter today-it was absolutely fabulous!! SUPER impressed with all of the details and the fact that you guys talked about her YouTube T1 Diva videos! J LOVE IT!!!!!”

TIME IS RUNNING OUT FOR THIS, THE FIFTH YEAR!!!!!!–get your child’s personal letter from Santa today–last day is the 15th (tomorrow)….and help fund diabetes research at the DRI.www.SantaClausDRI2015.org

There has been much happening in the arena of spreading awareness of the missed Diagnosis of type one diabetes; but it is not fast enough…..is it? When I read of Tyson, my heart broke—-more needs to be done. I will be presenting a fuller, more detailed, report next week on what has been happening. But I have a resource for ANYONE WHO WANTS TO DO SOMETHING NOW—IMMEDIATELY.

IF YOU ARE ANGRY AT THIS, and many of you surely made it clear that you are—-are you mad enough to Just Don’t DO Nothing….are you mad enough to try to make a difference….NOW.

I have been fortunate to work with the National Association of School Nurses (NASN) recently and Donna, their Executive Director and Sarah, their Certified Diabetes Educator; have really embraced us working together to make a difference in this battle. I was even given the opportunity to be a keynote speaker at their Annual National Conference to share the importance of what so many of us are trying to do. The School Nurse attendees were overwhelmed at the information.

Recently NASN included in their weekly update, in the “Nurses Tool Box” section (sent out to 33,000 members) a letter. A letter which nurses should send home with any child coming into their office with flu/virus like symptoms. We can all help this effort by printing a few copies out and giving them to the school nurse in schools in your area. (see the link below)

This letter will make a difference.

Present copies of this letter to your school nurse and ask them if they saw this National Association of School Nurse’s sanctioned letter to be sent home with any child with flu/virus like symptoms; and ask them to keep a few copies in their desk and to use them. Again, make copies and hand them to any school in your area——this impact can be real and it can be immediate!!!!!! Here is a copy of the letter:NASN Document School Nurse Letter

If we all did this in the upcoming week, we would immediately reach hundreds of thousands of kids. Imagine saving just one family the heartache of what so many know all too well. Imagine saving one life. How mad are you? Are you mad enough? What will you do?

I have stated it before and will state it again as long as there is breath in me; when Kycie, Reegan, and David passed away from undiagnosed T1D while in DKA (there is a link at the end of this story defining DKA)–they were not the first, and unfortunately they will not be the last. This is not a topic that I enjoy writing about, but as many know—-it’s a driving force in any spare time I have.

David Irby was a teenager and I am going to copy and paste the exact opening from reports from the station that broke the news from KOLO News, the ABC affiliate in Reno, Nevada.RENO, NV – The symptoms were just like the flu: sore throat, body aches, and nausea. But when Damonte Ranch High School senior Tyson Irby got sick a few weeks ago, he never got better. Within days he died of a disease no one knew he had. This wasn’t some mysterious disease, it was undiagnosed Type I Diabetes.

“He was just a great kid. High on life, just happy,” said Anthony Irby, Tyson’s father. “He was just full of life. He was happy, he was athletic. He just never seemed like he had bad days. Not a complainer.”

Tyson Irby was a relatively healthy kid. He’d have your normal flu or cold every year, but who doesn’t? That’s why when he came down with flu-like symptoms last month, his parents thought nothing of it.

There are some fact-checking I still need to do in the story, and am checking on it presently. But the result is the same. Another child is gone because we did not know. For those working on this subject matter, pass this story on to whoever you are working with…..there will be a swell of activity surrounding this story and it will slow down again.

I remind all of us, for as long as I have been working on this trying to make something happen, it will not be the last time and unless we all do something about it, the tide will not change. DO NOT let this flurry of pain and anguish go without trying to do something.

<SIGH> This truly has to stop.

There are some people who are now doing things, if you are friends with them ask them what they are doing; they will share…..they are doing GREAT things to change this and you can too. There is no monopoly on advocating this…..ask, get out there and do something with whomever you want. If we do not do it, who on earth will. If you need ideas, send me a message.

This is MORE THAN so sad, THIS IS SO AVOIDABLE. People need to BE SURE they do not have T1D……..get involved, PLEASE.

Her name is Debbie, and she volunteers her time. When I asked her what her favorite way to volunteer, she answered simply, “I sing.”

But Debbie’s way of singing is a dream for most others you see, Debbie sings with the Mormon Tabernacle Choir (MTC). At any given time, they pull into town after taking up three airplanes, 11 buses, and 200 rooms to house the singers and musicians—-all volunteer—-mega-known singing group. Their precision and talent is known world-wide; they are, in essence, the best at what they do. They work, rehearse and perform.

Sometimes the music is ‘still wet’; meaning the sheet music they receive is barely dry when they start their rehearsals. Of everything the Mormon Tabernacle Choir (MTC) is known to be, Debbie shares that her favorite is the way they uplift people. She has shared the stage with so many celebrities and this year, their holiday concert on public TV, will be no less as spectacular as the world-famous Mormon Tabernacle Choir will be joined by the Muppets.

Debbie’s eyes twinkle when she shares, “Oh they were just wonderful. Very professional. And their mission, like ours, is to lift spirits as well”. Thus was my flight this morning at 5:00 am after getting home late from a black tie event in New York City…….but not just any black tie event, one that lifts spirits as Debbie shared of her beloved, Mormon Tabernacle Choir. By doing something extremely positive and uplifting.

When almost 800 people are in the room together, you can bet your life that there was ‘much rehearsal’ in making sure everything went without a hitch. The Unlock the Cure Empire Ball was about to begin. It can be pretty noisy when you get this many people in the same room at the same time. But just as the conductor begins the 360 voices of the MTC, and the room silences; so too did this event come to a complete hush as one of the honorees, Carl Kuehner III spoke of his nephew, Matthew.

Matthew is a wonderful young boy who has had diabetes for some time, even at his young age. He does not like it when he leaves a room and comes back in and people stare at him as if he is different, knowing he was out checking a blood sugar or dosing insulin. His uncle shares how, once, there was a fire drill at school. After all of the students exited the building Matthew began to panic and ran back into the building after exiting, knowing that he had left his diabetes supplies in the building, “No child should have to live that way”, Carl shares.

He’s right, no one should have to live that way.

The tears in the room showed that many agreed. When it’s safe and common to say, “I don’t believe in a cure, why bother?”, those involved in orchestrating this incredible evening believe completely otherwise and quite frankly, we should all take note.

You see Peter DiCapua, the Chairman of the event and this year’s Life Time Achievement Award Recipient (it will bear his name moving forward) does not have a direct family connection to diabetes. Yet for over thirty years he has been involved with this event in a leadership position because he has seen the devastation of diabetes through his many friends who DO LIVE with this disease. We, who do have loved ones, should follow Peter’s lead; WE OWE our children nothing less.

Peter takes the numerous honorees down to the DRI each year to tour it, to listen, to ask questions, and to believe; as he does. Peter has an incredible business mind and all those participating in the New York City-largest-of-its-kind Real Estate Black-Tie event which has been around over 30 year and has raised over 35 million dollars, well…..they take this VERY seriously. They search all over to make sure they are involved in one of the best places to invest their money to find a cure.

As my dear friend Charlie Rizzo ( a founder of this event) taught me a long time ago, I have to do what I do, it’s for my children. Others do not HAVE TO be involved at all, but they choose to. I also am biased toward the DRI; I have never said otherwise. I have searched long and hard also and would leave in a New York minute if I thought some-place else was worth the incredible effort of so many.

So many surely smarter than I, and surely able to donate where they choose, and yet, after their search, they support the work of the DRI. As Bill Sotomayor, another honoree stated to the captive audience, “I sat where you sat for years, and when I saw this magnificent place and witnessed the passion of those at the DRI; there is no other words but…….life changing.”

A magnificent event.

It’s important that WE ALL FIND a place we believe in. Us here. You perhaps somewhere else, and it’s ALL GOOD. Just Don’t DO Nothing…..right? And a reminder from people who do not live our diabetes world day-in-and-day-out like we do. A group who chose TO DO something. A night to humble any man, and surely this writer was one of them. A group who want to support a cure for your child and mine. As Peter closed his comments he stated, “The only thing that would make me happier, is the day that what we seek is found, and we unlock that cure.”

I have heard this statement a million times. “We need…..” In reference to the diabetes community; we need a really good spokesperson; we need an ice bucket-type challenge, and other things…we need…we need….we need……….uhm……..not really.

We need to pull the weight ourselves……..all of us.

Mary Tyler Moore has given tirelessly of her entire career to the message of diabetes through the JDRF. We can argue the fact that she is probably in ‘the top 3 category’ women EVER to be on television. She did countless public service announcements which aired, she did countless trips to JDRF functions and private meetings (I was even privileged to be with her on one of them), she did a countless amount of trips to talk to elected officials…..never has there been a better public figure than Mary Tyler Moore in ‘speaking diabetes’. The JDRF, NO—we; in the DOC—are lucky to have had her and her messages for so long. Someone so tireless, and yet, the message still needs to be heard. Did the world ‘get it’? So is the answer ‘just’ a great spokesperson?

The JDRF and ADA walks and rides are the best in the world. THE BEST. They get countless amounts of people and raise millions—-MILLIONS of dollars. Ever go to an event that has a fund-a-grant—well you can thank a woman in Seattle named Deniz (JDRF long-time employee) and the Benaroya Family of Seattle for starting that stroke of genius a million years ago. So is the answer ‘just’ doing a NEW event?

Years ago you never even heard of the JDF (JDRF)…and the ADA was mostly a group of physicians and you might have heard of walk in October. To be honest, even in my professional life at the DRIF, I am glad that these organizations are what they are with the people behind them because I was here in 1992……..and let me tell you something….at THAT time there REALLY was no understanding about diabetes. These two organizations set the bar and opened the door for many smaller organizations and educational opportunities………and off we went.

A difference between T1 and T2???????…….back when??????……seriously?????……people never even heard of the disease much less discussions about better understanding.

Are we done yet. ABSOLUTELY NOT!

But before we are so quick to say that nothing has been done…….let me assure you with almost 23 years at this at full speed I agree with what Dorothy said in the Wizard of Oz; “……. if I ever go looking for my heart’s desire again, I won’t look any further than my own back yard. Because if it isn’t there, I never really lost it to begin with! …”

Many organizations have been created over the years with GREAT focus and if ever there is not a perfect synergy between you and a group……find another; they’re out there. It’s easy to just say, “we need….” and be done with it. I’m here to tell you that “we need” is alive and well and more than that ‘we need’ is here now. Add to all of this the DOC, we have one helluva powerhouse.

If you are not plugged-in somewhere—get plugged-in somewhere. Yes we always need new spokespeople and new ideas, but let’s not forget what is here right now. Be the addition to what is here now before re-inventing the wheel–change them up to make them better, and add as needed. There is still nothing so exciting as seeing 8,000 people the morning of an event. I know, I see it every year at one of our walk-event with Walgreens and the DRI at Miami Marlins Stadium. If you are active in these type of events with JDRF and ADA—you see it too. It is shown ALL OVER the world…..Is there ANYTHING like it…….really?

They say there are almost 30 million people out there with diabetes (T1 and T2) and add the multiple of 3 other family members and the number comes to 120 million people have, or have a direct connection, to diabetes. And if you are interested in just T1D, that same number is about 8 million with/with-direct-connections…….are there 8 million people in the epicenter of events around the country? Not even close.

Without going into detail, in my immediate family we are directly impacted (or have been) by MS, Cystic Fibrosis, Alzheimer’s, and Autism–the organizations surrounding these events have shared (in part) over the years of the huge success in the diabetes world. They see it more than we do. They cannot even fathom having two humongous organizations like the JDRF and the ADA both surviving and flourishing side-by-side; not even to mention major research centers like Barbara Davis, Joslin, and the DRI all also being in the mix. Now add CWD, Camps, DECA, The Diabetes Scholars Foundation, and many, many more with specific and different missions. We need…………what…….I ask?

So what am I saying? As Dorothy stated, we have in our backyard EVERYTHING we need to succeed, and or be heard. I think we need to figure out how to get those who ‘do nothing’ involved…..either that or just understand WHAT we do have.

More to do????? Absolutely.

But “we need…..” must be replaced with; ‘put me to work…..’ because heaven knows we have what is needed……..every entity mentioned just needs more workers/volunteers/donors……there is nothing too small; and they will all welcome any and all help you can give. I have said it forever, “Don’t Do Nothing”………………and don’t.

Part of the ‘year-end-campaign’ for funding the Diabetes Research Institute and in recognition of Diabetes Awareness month, The Diabetes Research Institute Foundation (DRIF) created this video which highlights the story of one of my most respected heroes in this diabetes fight: Michael Otten. Michael chooses to NOT do NOTHING. In addition to his huge generosity, his story from 9/11 is unbelievably compelling.

Whether you choose to give or not is your call, but you will truly find his story fascinating…..click the picture above or click here to take you to the DRIF page with Michael’s incredible video…….in his own words.

I have often read comments from people in the diabetes community about how they wish people, celebrities, would do more to help. The truth of the matter is that there are quite a few.

Of course we always believe that our diabetes concerns should be front and center but it is a big world out there and only limited space for so many causes. Let’s take a look at just some, and a BIG ONLY some, of the celebrities and how they have helped in various causes. Without question, the leading celebrity voice for diabetes causes is Mary Tyler Moore.
(In all of the examples below, click the picture to see the short video.)

Ms. Moore’s efforts on behalf of the JDRF span the decades but she was not alone in assisting diabetes causes and there have been many. Ever see this one with Sandra Oh, Nicole Johnson, and Brett Michaels to name a few.

And music sensation, Nick Jonas, did much work for many organizations, here is his PSA spot for the American Diabetes Association along with Jay Cutler’s spot as well.

Many celebrities from sports and entertainment attend events on our behalf, testify before congress, lend their names and their time to attend events, donate money (many times without any fanfare), and even perform, as is the case tonight in Miami where music icon Barry Gibb will be singing some of his top hits from the Bee Gees at the DRIF’s Love and Hope Ball for almost 800 people.

This is but a sampling (and surely not a complete) of an ever-growing list that includes others like Ray Allen and his family, Olympian Gary Hall and Kris Freeman, other football greats Kendall Simmons and Vince Wilfork, race car driver Charlie Kimball and there are many, many more of which I have not forgotten, but only used a sampling to show that so many DO INDEED care; and help. Feel free to add anyone you want to mention as a reminder to everyone else.

We surely would love for many more stories in the news and the media to center around diabetes and surely we would like the list to grow, and the stories be more plentiful, but we should also recognize that many do much.

He is getting ready to tour. He was on Saturday Night live recently. He is making the circles around the talk show circuit. He mentions the DRI when he can. He and his wife, Linda, believe in the mission of the DRI. He was very close to Marty Kleiman, one of the founding families of the building which stands as a beacon of hope for all of us waiting for a cure of this dreaded disease.

I did not know Marty, I have been told he had incredible drive, a wonderful sense of humor, and the ability to make anyone feel comfortable when he was in a room. He lost his battle to cancer and his family’s efforts are surely engrained in the fiber and heart of the DRI even today. His son, and my colleague, Gary is one of the most knowledgeable people I know in the research world—he IS THE go-to person when something comes across my path of which I had not heard about. Gary has had diabetes for a long, long time. Yet he still has such a high hopes for a cure.

Some have become cynical about the cure, and that is surely their right. I know so many have heard of ‘this cure’ for so many years that they have become jaded. Some have just resigned themselves to the fact that if it comes great, but breathes will not be held waiting for it. The promise broken too often. It certainly is understandable. But I cannot be that way. Seems, neither can Gary. Neither can so many more. There is a reason we believe in the DRI even though so many of us have come from so many different walks of life in our diabetes journey.

It is not only what I have seen myself, but when I see the DRI through the eyes of so many people who; ask the tough questions, who get involved because they too believe, have toured the building, who understand the science and say, “…the DRI gets it…..”, and so many who lend their talents, their money, and in cases like Barry Gibb; even their well-known and good name to the place that means so much to so many, that continues to inspire me. Why would they be involved unless this place was so special? Why would I?
Many well-known people have inspired me with their incredible work to no end but it was a chance meeting two years ago that also showed me an incredible compassion as well. Barry’s brother, Robin, was so very ill with cancer. At the same time, my brother-in-law was also extremely ill with cancer. Within months of our meeting, both of our loved ones would lose that painful battle.

Through a series of twists and turns, we ended up together back stage. We talked about the brilliant concert he had just given at the DRI’s Love and Hope Ball. I thanked him for giving such a great concert. I said I knew a lot was going in his life and I appreciated his support for all of our kids with diabetes, even though his own family’s health battles were well-known. He informed how grateful he was to once again be with us. He also shared that he was surely concerned about his brother and I told him about my brother-in-law, Joel. We talked a little bit about what we each were going through; and that will stay between he and I.

At the end of the conversation I thanked him, and we hugged.

Yes, hugged.

I have found that for most people, no matter their status in life, the connection of an incredibly shared human moment is something that transcends everything else……even if it just happens to be with one of the greatest icons in music history.

I love sunrises and sunsets. While I was attending Hofstra University, I would sit atop the tall dorms and watch the eastern and western skies. It was so relaxing for me.

The sunrises. Oh my oh my I have stated on so many occasions that no one makes more mistakes than I do in this thing called diabetes. It is not a phrase of rhetoric, it is a fact. I try not having to learn things more than once, but not always successfully. The cool thing about sunrises; it’s a new day.

I have always lived by the point that a new day means new opportunities. Both my job (working at the Diabetes Research Institute Foundation), and where I volunteer (CWD, writings, advocacy, etc), allows me the absolute incredible opportunity of something new happening every day. A new initiative, meeting new people, discussing ideas with people who want to help, and people with ‘skin in the game’ just like us.

The Monday mistakes turn into Tuesday’s new beginnings.

I hear from teenagers with diabetes so often how different they feel. How they are told that things cannot be accomplished because of their diabetes. I’m told the same by many parents who also fear that heir kids cannot do as others. I tell them that it is a lie. The world is for them to grab and they must make the decision to go out there and get it.

I received two pictures recently. The hockey player is Sarah who is 15 and diagnosed at age 11; the other is Kelly who is also 15 and diagnosed at age 3. The two photos are absolutely incredible. I LOVE Sarah’s determination ‘along the boards’ and I LOVE Kelly’s face of determination. Karate and playing hockey for goodness sakes. Do either of them look like they are not ‘able’ to do anything?

And they can. All of our kids can. And many do.

Their parents sent me their pictures which I used in my slide presentation at my CWD Keynote address along with over 50 other kids who have diabetes and are not afraid, and they shouldn’t be. They inspire us all each and every day that as sure as the sun rises, they are ready to take on the world. Numerous parents thanked me for the inspiration they needed to see in other kids to remind them that limits are in our minds only. But of course the thank you goes to the parents who shared the incredible photos of their wonderful kids.

The sunsets. A glass of wine, perhaps, and just looking at the sun setting in the west is always relaxing to me. Long Island has beautiful sunsets and as the day ends it serves as a reminder of what the day held. What went well, what didn’t; and what to change tomorrow to move on.

Moving on is another crucial aspect to dealing with diabetes. When we think, “….duh!, why did I do that?…..what was I thinking?…….” Of course those who do not have diabetes in their household can also have these revelations but when there is so much on our plates, and so much more to balance when it comes to diabetes, I’m always grateful for daily beginnings and endings to continue onward.

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This is my blog. I am not a medical professional and any medical written word is read somewhere else and will be credited accordingly. There is no substitution for YOUR medical team. I am not paid for what is written on this blog.